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Tag: AIDS activism

I did not grow up watching Elizabeth Taylor on the silver screen. If I did, I’m sure that like many young people who did come of age with her (like my parents), I would have been utterly distracted by her dark-haired beauty, her striking violet blue eyes and all of those marriages. She was a superstar.

I, on the other hand, came of age during the 1980’s. During a period of tumultuous change – somewhat like now come to think of it. I witnessed (on television) the fall of the Berlin Wall, the fallout of Chernobyl and individuals, families and institutions grappling with the HIV/AIDS epidemic. The Elizabeth Taylor that I grew up with was the most famous AIDS activist in the world.

Sex, AIDS and No Hope. I remember my oldest uncle telling me, as I prepared to go to college, how young people now didn’t have to wait to get married to have sex like his generation did, but that having sex might kill them. HIV/AIDS put an end to the care-free sexual revolution.

I never imagined that less than 2 years later my youngest (and favorite) uncle, Uncle Bernard, would tell me that he and his boyfriend, Harold, were both HIV- positive.

Uncle Bernard and Harold lived in the quaint artist colony of New Hope, Pennsylvania, a popular weekend getaway for many in New York and Philadelphia. I spent many happy weekends and a summer living and working with them – dancing to Madonna’s Vogue and other 80’s hits with Harold at the Cartwheel, dining at Chez Odette’s and sipping wine like a bona-fide grown up at art gallery openings.

But, AIDS changed all of that. By the late 1980’s and early 1990’s, New Hope’s gay population was devastated by the AIDS epidemic. There was essentially NO HOPE in New Hope. Every week seemed to bring more bad news: someone else was in the hospital with Kaposi Sarcoma or Pneumocystis pneumonia; another friend was no longer able to work and was being evicted from his home; a neighbor had a T-cell count of 4 and had jokingly given each a name (the average count for these infection fighting cells is 500 to 1,500). Dark humor for dark days.

Those of us who lived through this era will recall the hysteria that spread through America regarding how this disease might be transmitted. It was like the dark ages – HIV-positive children, such as Ryan White and Ricky Ray, were shunned and not allowed to go to school or their homes were torched by mobs who feared the spread of AIDS. And, to make matters worse, some praised God for killing the homosexuals and drug addicts with AIDS. It was a lonely time for people living with HIV/AIDS; and my grandmother, a devout Catholic, left the church and prayed at home for her youngest son.

Acting; New Hope. Many stayed at home, afraid. But, thankfully, others, such as Elizabeth Taylor, got angry and courageously took a stand. By her very public actions, she provided new hope for a cure, a vaccine and a better life for those living with HIV/AIDS.

Elizabeth Taylor lost 2 close friends to AIDS. She took the pain of her loss and turned it into something positive – a global movement that changed the way many people viewed AIDS and its victims. She was quoted on CNN.com as follows: “Everyone was talking about AIDS, but talking behind their hands[.]” … “But nobody was doing anything about it, including myself. And then I got really angry.” … “People were telling me not to get involved, I got death threats, I got angrier and angrier. So I put myself out there.”

She tirelessly used her superstar power to raise awareness about the disease and funds ($270 million) for the fight against HIV/AIDS. She is an inspiration to me.

AIDS at 30; Action Required. This June will mark 30 years since the first AIDS case was reported.

So, where do things stand? We understand the disease a lot better now but we still have no vaccine. Certain populations in the U.S. and around the world are “safe” while certain (especially, people of color) are far from safe from HIV. People are living longer and more productive lives with HIV but every 9 and ½ minutes someone in the U.S. is infected with AIDS. (www.nineandahalfminutes.org)

There is still much to be done.

Continue the fight and stand up to those who would take funding away from groups like Planned Parenthood who provide crucial preventative care, education and screening to at-risk populations. Stand up to attempts to repeal provisions of the Affordable Health Care Act that protect people living with HIV/AIDS from insurance industry abuses. Stand up against the mob mentality of the religious right that in the name of budget balancing efforts is trying to erode what took activists like Elizabeth Taylor 30 years to accomplish – do not take your rights and the rights of those less fortunate than you for granted. Inaction when it comes to HIV/AIDS prevention and research is tantamount to negligent homicide or worse. Don’t look the other way. It is your time to act. . Fight for what is right. Use your voice and your voting power to provide hope for a cure and a vaccine.

In memory of Bernard Genest, Harold Wireman and their good friends in New Hope & Lambertville and the two Elizabeths, the famous actress to many, but to me, the fearless and powerful AIDS activist.

Tamara Fagin is a recovering tax attorney, mother of two, wife of one, and closet activist trying to get the courage to Embrace Controversy and Create a Movement.